[adenure]

#1059866

Hi all,
Are there statistics on how often a thyroid regenerates after a TT? I’ve read of it happening; one lady online saying she was going in for a third TT! How common is this (even just twice)? Needless to say, it’s not something I want to do again!

[adenure]

#1178355

Also, if a thyroid were to regenerate, would it happen within a certain time span? Like within a year or something? My surgeon took 99% of my thyroid. I guess an ultrasound would confirm it. I ask bc even though my free T4 and T3 are normal, my TSH has gone from 1.6 to 0.29 in 3 months. I don’t know- just wondering.

[snelsen]

#1178356

I don’t know. Interesting question. It is possible that the person developed thyroid nodules. Maybe it is possible. Let’s both try to find some reliable references to see what we can learn. I know mine has not, 5 decades later.
Shirley

[Naisly]

#1178357

You know what the feedback loop is right? That’s when the pituitary detects too much(or too little) hormone and tells the thyroid to stop(or start) making T3/4. Yes you have no thyroid but your pituitary does not know this. So it is reasonable to say that you and your doctor need to look at your ‘normal’ labs again and how you are feeling.

adenure Btw, have you ever had your calcitonin checked? Just wondering ’cause I just had a convo about this with my mom and thought about you.

[snelsen]

#1178358

That makes sense to me, Naisly.
Shirley

[Kimberly]

#1178359

Hello – This is one of the more recent studies, and in this particular one, there were no cases of recurrence for total thyroidectomy (which is probably more accurately called a “near-total” thyroidectomy).

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.ncbi.nlm.nih.gov/pubmed/21345453

I actually met two of the authors from this study last year, and as I recall, the % recurrance after subtotal thyroidectomy was higher than that. I want to say it was 16%. However, it looks like you have to pay to get the full article, so I’m not able to verify.

Hope this helps!

[adenure]

#1178360

What does calcitonin have to do with my TSH? Just wondering.

[Naisly]

#1178361

Quote:

What does calcitonin have to do with my TSH? Just wondering.

Oh, nothing it was a separate question to the post (I guess I should have been more clear on how I asked the question). My mom takes it as a spray and I was thinking about you because you had mentioned before you had achy joints sometimes so I was just curious.

[npatterson]

#1178362

I had not seen the 16% article. I have personally known 3 people whose thyroid grew back, and for each of them was a very long time later (10-15 years). The one I remember best was someone whose thyroid actually grew down her throat.

This particular risk of recurrence is the reason that thyroid cancer patients have very large doses of RAI after their total thyroidectomies. BTW, unless the terminology has changed, a sub-total thyroidectomy is when they intentionally leave a portion of the thyroid, in those that they think the remaining part can handle the body’s needs. What they learned was that that portion usually died away, and you were left hypothyroid, and sometimes not being able to figure out why.

Take care,

Nancy Patterson

[adenure]

#1178363

Nancy,

Did those 3 people have total thyroidectomies? Why does this happen? Does anything cause it or are there circumstances where it would be more likely to happen? It seems odd that a total thyroidectomy would regenerate yet leaving part of the thyroid would die out and not regenerate? Is that right? I guess I worry a little bc I’m one of those who can’t take the ATD’s due to liver issues- so the last thing I want is my thyroid to grow back. Did the 3 people you know have another surgery? Were they Graves patients?

[adenure]

#1178364

Grew down her throat? What happened? Was she able to breathe, eat & drink? Did she have that problem before she had the first surgery?

[adenure]

#1178365

Okay last question… for someone who regrows a thyroid, would it make sense to do RAI with the idea of killing the gland off so it can’t grow back?

[Kimberly]

#1178366

Hello – Hopefully, Nancy will check back in here, but keep in mind that her contacts related to Graves’ go back more than 20 years! It’s just been within the last few years that total thyroidectomy (or “near total”, if you prefer that term) has become the more common procedure. I would be extremely shocked to hear back that *any* of these three had had a total thyroidectomy!

Basically, the same trend has happened with RAI. Docs used to think there was a “just right” dose of radiation that would kill off just enough thyroid tissue to leave the patient euthyroid – not hyper *or* hypo. This was great in theory, but in practice, too many patients either had a recurrence of their hyperthyroid symptoms, or they eventually went hypo anyway. So now the practice is to give a “fully ablative dose” – or enough to fully destroy all thyroid tissue.

We had a doc mention at our conference in 2011 that doing thyroid surgery a second time comes with additional risks, so RAI is an option for those few who do experience a regeneration of the thyroid.

[snelsen]

#1178367

This is a bit of a ramble.
I spent over an hour reading “studies” this morning, all related to this general topic. Many were in PubMed . Many had a population of 23-60 people, and drew conclusions after 4-9 years. Now I have some comments for thoughts and consideration about references and studies. In the past, I have also been on a committee comprised of citizens and health care professionals, who review proposed studies, and frequently we critique them with major flaws, in the study design.
There is a lot of pressure to “publish, especially in the academic realm.
I did a health care related study for my Masters in Health Education and Policy.
Everything about my study is outdated and inaccurate now. And my committee did a pretty good job of tearing it apart on a regular basis, and having me tighten it up and re-write it about 9 million times.

There is a TON of difference between long term, longitudinal studies with a large sample population, with skilled investigators, with the variables carefully controlled and identified, which in turn create the limitations of the applicability of the study. These studies are usually more readily found in NIH. (A good example of a long term, excellent study is the Womens’ Health care Initiative.)

So this is my experience.
In this country, before around 1986, the Standard of Care for surgical management of Graves was a sub-total thyroidectomy. That is what I had.
The current thinking then was that if you leave a tiny bit of gland, it will produce a small amount of thyroid hormone, thus eliminating the need for additional thyroid medication. Contrary to some of the thoughts in these recent posts, my own experience and knowledge is that sooner or later, with
the factors of aging,plus other unknown factors, plus the tiny amount of thyroid gland left, just petered out, and sooner or later, most of us noticed we were too tired, and getting the symptoms of being hyPO. Which is exactly what was happening. So, for around 30 years, after my sub total, I was euthryoid, with no thyroid supplement. Then, with the hypo symptoms, plus some labs that were not really that dramatic, I began Synthroid, and became my old self again. I could not find much data documenting that a recurrence of hyPER happened after a subtotal thyroidectomy. The endocrinologists began to think it would make a lot more sense to remove the whole gland, thus regulating the amount of thyroid hormone would be less of a guessing game.
In the US, the Standard of Care now is to do a TT.

I imagine ANY growth in the neck area, thyroid gland included, left untreated and/or diagnosed, will put pressure on the esophagus and other surrounding structures, including the vascular system.
Shirley

[smtucker]

#1178368

This talk of thyroid growth is making me anxious. I hope that my thyroid has the good sense to stay gone. I am not interested in a second Act.

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